Global bioethics blog

Promoting reflection on bioethics and research ethics issues in Sub-Saharan Africa

Friday, November 28, 2008

Making HIV transmission a crime

There was a time when persons living with HIV were treated in somewhat peculiar ways, considering that they had a transmissible, incurable and (before the advent of antiretroviral treatment) invariably fatal disease. Some of the virus' chief modes of transmission -- injection drug use and anal sex -- led swiftly to stigmatization and discrimination towards carrying HIV, and therefore public health agencies, governmental organizations, and advocacy groups stressed the need to protect HIV-positive persons. Initially, when there was no effective treatment, there was no great push to have members of 'at-risk' populations tested: testing (it was argued) would increase stigmatization without real compensating benefits. Whenever testing was done, there was elaborate concern about preserving the confidentiality of the tested person, given the possible social consequences of being outed as HIV-positive. The ethical hand-wringing around HIV testing only started to decline, after two significant biomedical innovations: the development of means to prevent mother-to-child transmission of HIV, and the discovery of effective anti-retroviral treatment. It is only recently that public health agencies have used somewhat more aggressive means to get people HIV tested, such as 'opt-out' testing of pregnant women in hospitals. What makes all this peculiar is that transmissible, incurable and fatal diseases generally have not been handled with such delicacy and restraint in the past. Even epidemics of transmissible and curable diseases -- like tuberculosis and syphilis -- led past governments to invoke laws and ordinances strongly limiting personal autonomy for the good of society. From a public health perspective, HIV/AIDS has been treated exceptionally, i.e. there has been a greater stress on personal autonomy and human rights when tackling it than has been typical for diseases of this type and magnitude.

Against this background, an opinion piece and a recent news item caught my eye this week. In the Bioethics Forum, Udo Schuklenk argues that some HIV transmissions ought to be criminalized. The kinds of transmissions he is thinking of are clear-cut cases where a person, who knows he or she is HIV-positive, engages in unsafe sex with his or her partner, and the latter becomes HIV-infected as a direct result. Schuklenk is not worried (rightly) that criminalizing this sort of HIV transmission is stigmatizing or discriminatory to the perpetrator: knowingly exposing another person to HIV infection is just plain wrong, and the general concern about the human rights of HIV-positive persons shouldn't obscure the fact. HIV-positive persons need certain kinds of protection as well as access to prevention, care and treatment -- but they are not above the law.

Compare with this: in the small province of Papua in Indonesia, a bylaw has been proposed to involuntarily implant microchips under the skin of certain HIV-positive persons. Which HIV-positive persons? Those which are deemed 'sexually aggressive', i.e. those who are suspected of knowingly having the disease and actively spreading it intentionally to others. The microchip -- in some science fiction twist -- is supposed to track and identify the suspected person's sexual behavior. The proposed legislation stipulates that those found guilty of infecting others would be liable to a $5000 fine or six months in prison. This approach, of course, is a radical departure from 'AIDS exceptionalism'. The kid gloves are off: Indonesia has a growing HIV/AIDS epidemic, so let privacy be damned.

In some way, these two stories are related. One could say that the Indonesian proposal is merely a matter of being proactive: if intentionally infecting people with HIV is wrong, then we should have accurate tracking systems for 'suspect individuals' in order to control their behavior and prevent infections, as well as faciliate evidence-based judgments of criminal guilt when an infection occurs. But it seems ethically desireable to distinguish (a) criminal punishment of those who knowingly infect others with HIV from (b) invasive surveillance of individuals who allegedly might knowingly infect others with HIV. (a) is an expression of common sense and basic justice, whereas (b) has no clear public health or legal justification, and seems a step towards an Orwellian nightmare.

Monday, November 24, 2008

Singapore and compensation for organs and eggs

The National Bioethics Committee in Singapore has been pretty busy lately. At the start of November, the Singapore Ministry of Health announced a change to the Human Organs Transplant Act (HOTA), and the National Bioethics Committee publicly endorsed the revised law soon afterward. Just days later, the Committee released guidelines on the donation of female eggs for research. And one of the central ethical issues in both cases concerns compensation and inducement in the context of exchanging human biological materials.

Should donors of organs or eggs receive some sort of compensation for their act of giving, or should it be a pure act of altruism? Should organ or egg exchange be a market-force driven transaction like any other -- like the buying and selling of cars -- or should these exchanges have a special, non-commercial status in keeping with the dignity of human beings? Positions in this domain often get polarized into the kinds of extremes that the media love: on the one hand, libertarians and utilitarians who think people ought to be able to do what they want with their body parts (including selling them), and that this sort of freedom is the ultimate solution to demands for organs and eggs. On the other hand, some believe that only the most restrictive laws are in keeping with the special status of our species, even if this comes with the cost of diminishing the supply of useable organs and eggs (for some members of that same species). For those unconvinced by the concept of 'dignity', there is also the consideration that wherever paid organ exchange takes place, the exchange from donor to recipient tends to channel along the lines of social injustice, i.e. from the poor to the rich, from women to men, and from non-Caucasian to Caucasian.

The Singapore approach involves a tricky distinction between compensation and (undue) inducement. The National Bioethics Committee is of the opinion that organ and egg donors should compensated for the costs to themselves involved in the act of donation, including loss of time and earnings, the burden of physical and psychological risks, transport and medical costs, including follow-up medical expenses and (in the case of organ donors) possible higher insurance premiums. Determining a fair level of compensation in general would seem to be very difficult, given that there will be diversity in (among other things) economic status between recipients and donors. The Committee wants to discourage people from seeing the donation of their organ and eggs as a for-profit activity -- even if third-parties do make money out of it -- while also avoiding placing an unfair burden on donors. The result will probably displease those on both ends of the bioethics extremes, but that is usually a sign of health when it comes to regulations.

Wednesday, November 12, 2008

Medical tourism and global health inequality

By many accounts, the numbers of patients from industrialized countries seeking medical treatment in countries like India, Thailand or Cuba are increasing rapidly. Last year, the New York Times issued a piece whose basic theme was that medical tourism is becoming 'normalized', i.e. it is no longer just an option for a small minority seeking cheap nosejobs or teeth-whitening. North Americans and Europeans are now looking to developing countries for highly-invasive and life-extending operations, like heart-valve and hip replacements. That medical tourism is becoming regarded as a solution to the problems of high medical costs and insurance premiums is exemplified by the fact that insurance companies in the US are starting to provide plans that encourage clients to seek some medical interventions abroad. And governments in developing countries are encouraging the trend, for the same reasons they promote more familar forms of tourism.

On the face of it, one could see this as a mutually beneficial transaction: patients from industrialized countries receive medical services at bargain prices, while medical institutions and individuals in developing countries receive much needed revenue. But, as a recent piece in Asia Times emphasizes, the picture is much more complicated. Creating pockets of 'first-world' medical care in developing countries also has a number of ethically untoward effects: internal brain drain of health care professionals from public hospitals to state-of-the-art clinics catering to foreigners, and the creation (or reinforcement) of a strongly two-tiered health care system, with a superior level of care for the rich and an inferior one for the poor. Besides being a source of injustice, medical tourism is also unrealistic as a solution to problems of health care systems in more affluent nations. Even if the numbers of medical tourism has increased, the numbers are still relatively small compared to those staying at home. But the increasing amounts of money spent abroad by medical tourists might have a positive effect, i.e. encourage what should have been a priority in the United States long ago: affordable and high-quality health care.

Monday, November 10, 2008

Dilemmas of testing and treatment

An editorial in a Pakistani newspaper offers this seemingly commonsensical ethical directive: do not give patients treatment until they have been correctly diagnosed (via testing procedures) to have the condition the treatment is meant for. Following this train of thought, a contrast is worked up between what the author calls 'speculation-based' and 'evidence-based' medicine. The former -- typically represented by 'quacks' -- can lead to all sorts of bad consequences, such as the potential harm caused when patients are given treatment for conditions they do not actually have.

In contexts of poverty, however, the connection between testing and treatment often gets complicated. Sometimes the access to treatment is better than the access to testing; sometimes it is the reverse. When diagnostics are scarce, sometimes all you have to go on are clinical symptoms and educated guesses. You don't have to be a 'quack' to find yourself in this position: just being a doctor in an under-resourced area of one of the world's poorer countries is enough. While this sort of guesswork can put patients at risk, doing nothing while waiting for reliable diagnostic tools to arrive is not risk-free either. Are doctors who make medical decisions about patients without testing them first to confirm their condition acting ethically? The World Health Organization has taken a pragmatic position on this issue, and for years it has recommended administering antiretroviral treatment for HIV/AIDS based on clinical criteria when no reliable diagnostic tools are available. As for testing without treatment, this -- a situation faced by many thousands in the developing world -- might be worse in some ways than treatment without testing: the latter at least involves the chance of receiving appropriate treatment.

Monday, November 03, 2008

Weaning Africa off health aid

There are often complaints that the richer countries of the North -- particularly some of them -- do not devote a sufficient percentage of their GDP to international aid. The thought is basically that a small sacrifice, say a few dollars or Euros from each citizen, could save the lives of many people in poorer nations. There is something right about this, but also something quite wrong.

To increase in international aid -- especially health aid -- shouldn't be considered something good in itself. International health aid can be valuable in cases of catastrophic health emergencies, but over the long haul, countries should not become more dependent on external funders to provide a decent level of health care for their own citizens. It is not just the indignity of dependence on others as such; it is also the instability and unreliability that goes hand in hand with such dependence, as the levels and priorities of international health aid are subject to the political and economic fortunes of the developed world. And they generally come with strings attached, hidden agendas and unnegotiated preconditions. The ultimate goal should be to reduce the need for such disempowering dependence to the greatest extent possible.

A recent article in the Bulletin of the World Health Organization, by Joses Mithuri Kirigia and Alimata J Diarra-Nama, give some good general ideas about how to wean Africa off of international health aid. Reducing inefficiencies, changing priorities in public expenditures, expanding the tax base, increasing involvement of private sectors, and fighting corruption: attempting to do all this will raise many practical and ethical problems, but at least it holds the promise of minimizing a dependence too long regarded as 'natural' and 'inevitable.'